Beyond Advance Directives: Personal Autonomy and the Right To Refuse Life-Sustaining Medical Treatment

By: Attorney Carol Stamatakis 1

There is a tendency to focus narrowly on state statutes governing advance directives for guidance when life-sustaining treatment2 is at issue. However, advance directive laws are best understood as efforts to create practical frameworks for recognizing and respecting certain fundamental rights. This article is an overview of the rights of patients to refuse life-sustaining medical treatment under the common law and the United States and New Hampshire constitutions, and the duties of medical professionals when such treatment decisions must be made. Legislative proposals emerging in the wake of the sensationalized case of Terri Schiavo would significantly narrow the circumstances under which artificial nutrition and hydration can be refused. Guidance is offered for understanding the scope of a patient’s right to refuse treatment, and for interpreting existing law and analyzing proposed legislation that potentially infringes on that right.

I. Foundations of the Right to Refuse Life-Sustaining Medical Treatment

The right to refuse medical treatment is rooted in the common-law right to informed consent, the liberty interest under the due process clause of the fourteenth amendment, the state constitution and state laws governing the care and treatment of incompetent adults. Courts have relied on these sources of authority in defining a patient’s right to refuse treatment.

A. The Common Law Right to Informed Consent

The right to informed consent evolved from notions of personal autonomy rooted in the common law. The right to have control over one’s body and refuse unwanted touching was recognized by the US Supreme Court in the 1891 case of Union Pacific R. Co. v. Botsford.3 In rejecting the request of a railroad company to perform a surgical procedure on a woman suing for injuries sustained in a fall, the Court stated:

“No right is held more sacred, or is more carefully guarded by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestioning authority of the law.”4

In 1914, in Schloendorff v. Society of New York Hospital, Justice Cardozo, sitting on the New York Court of Appeals, spoke to the liability of a healthcare provider in an action for trespass for treatment of a patient without the patient’s consent:5

“Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without the patient’s consent commits an assault, for which he is liable in damages.” 6

Interestingly, the right of a patient to be informed of his or her condition and treatment options, a necessary component of the patient’s ability to exercise informed consent, as it is understood today, is a more recent development.7 In 1954, when Joseph Fletcher, described as “America’s first medical ethicist,” stated that patients have the right to know the truth about their medical condition, this notion was extremely controversial.8 Well into the 20th century, doctors were not encouraged to tell the truth to patients, particularly the terminally ill.9 The 1940 Code of Ethics of the American Medical Association provided that “(a) physician should give timely notice of dangerous manifestations of the disease to the friends of the patient (emphasis added).” 10 Informed consent developed as a theory of recovery in medical malpractice. 11 Though first articulated in case law and commentary in 1957, it did not become a popular theory for recovery until 1972.12 In 1978 the New Hampshire Supreme Court noted that “(g)enerally a doctor has a duty to inform his patient of the reasonable risks involved in an operation or treatment so that the patient can make an effective choice.”13

According to the American Medical Association, “Today, physicians are called upon to promote patients’ well-being by openly discussing the balance between anticipated benefits of a given intervention and its potential harms.”14 Informed consent is generally required for medical treatment.15 Conversely, “the patient generally possesses the right not to consent, that is, to refuse treatment.”16 “This right is a corollary to the common law doctrine of informed consent, which follows logically from the universally recognized rule that a physician, treating a mentally competent adult under non-emergency circumstances, cannot properly undertake to perform surgery or administer other therapy without the prior consent of his patient. The fountainhead of the doctrine in the patient’s right to exercise control over his own body, by deciding for himself whether or not to submit to the particular therapy.”17

B. Refusal of Life-Sustaining Treatment – The Development of the Law Prior to Cruzan

Legal principles applicable to requests to discontinue artificial life supports began to develop in state courts in the 1970s. Cases that reached the courts prior to that time typically involved patients who refused medical treatment based on their religious beliefs, such as Jehovah’s Witnesses refusing blood transfusions.18 The New Jersey case of In Re: Quinlan first drew popular national attention to the question of whether artificial life supports, in that case a respirator, could be withdrawn from a patient in a persistent vegetative state and how and by whom such a decision should be made.19

Quinlan presented new legal and ethical issues that came about as a result of technological advances in artificial life support that allowed individuals to be kept alive indefinitely through artificial means, sometimes in an unconscious state and without likelihood of regaining consciousness and/or functional capacity. As noted by Chief Judge Hughes, delivering the opinion of the New Jersey Supreme Court, “(T)he law, equity and Justice must not themselves quail and be helpless in the face of modern technological marvels hitherto unthought-of.” 20

The patient’s father sought to be appointed her guardian with the express power to authorize the discontinuance of the respirator.21 The hospital and treating physician opposed his action, contending that removal of the respirator would not conform to contemporary medical standards which allowed removal of a respirator only upon a determination of death under the criteria for brain death.22 The state intervened based on its interest in preserving life.23 The New Jersey Supreme Court analyzed the case in terms of a constitutional right to privacy, drawing an analogy to several US Supreme Court decisions recognizing such a right in the areas of contraception and abortion.24 The Court determined that her right to privacy could be asserted on her behalf by her guardian, and set forth a procedure whereby he could choose her treating physicians and authorize discontinuance of life-sustaining treatment with their support and upon consultation with an “ethics committee” or like body.25

The New Jersey Supreme Court observed that under the practice prevailing at the time, the decision to withdraw a respirator was made by physicians exclusively and without family involvement.26 The Quinlan case ushered in an era in which patients and families would exercise increased decision-making authority in areas previously considered the province of healthcare providers. The Court strongly encouraged the development of hospital ethics committees, and expressed the hope that in the future decisions could be made privately by families and providers, without involvement of courts.27

The Quinlan case was to have enormous influence on courts throughout the country, public opinion and state legislatures. While the case made no mention of living wills, following the publicity generated by the case, statutes authorizing “living wills” began to be enacted. Courts throughout the country saw a proliferation of cases that raised similar issues, including the right to refuse artificial nutrition and hydration, with varying fact patterns.

By 1990, many cases were reported throughout the country involving the right to refuse life-sustaining treatment. There was general agreement that a competent person had the right to refuse life-sustaining medical treatment, including artificial nutrition and hydration.28 Beyond that, there was significant diversity among the states in the approaches taken when others sought to discontinue or refuse treatment on behalf of an incompetent person. 29 Decisions turned on the common-law doctrine of informed consent, existing state statutes and common law governing decision-making on behalf of incompetent adults and interpretations of state and federal Constitutional rights to liberty and privacy. Cases addressing the right to refuse medical treatment as a liberty interest under the 14th amendment involved a balancing of the individual’s liberty interest against relevant State interests that included the State’s interest in preserving life, preventing suicide, maintaining the integrity of the medical profession and protecting innocent third parties.30

C. US Supreme Court Recognizes a Constitutional Right To Refuse Artificial Nutrition and Hydration in the Cruzan Case

Cruzan v. Director, Mo. Dept. of Health, decided in 1990, was the first case in which the US Supreme Court considered the right to refuse lifesaving medical treatment under the US Constitution. 31 At issue was a request to terminate artificial nutrition and hydration on behalf of Nancy Cruzan, a woman in a persistent vegetative state. The Missouri Supreme Court had found that no person could exercise that choice on behalf of an incompetent individual in the absence of a living will or clear and convincing evidence of the patient’s wishes. The family failed to meet its burden of proof because they were relying on statements Ms. Cruzan had made (to the effect that she would not want to live should she face life as a “vegetable”) that the Missouri Court found to be unreliable for purposes of determining her intent.

The US Supreme Court recognized that a competent person has a constitutionally protected liberty interest under the due process clause of the Fourteenth Amendment in refusing unwanted medical treatment that must be balanced against the state’s interest in preserving life.32 The Court assumed that a competent person would have a constitutionally protected right to refuse lifesaving nutrition and hydration. 33 The Court held that the US Constitution does not forbid Missouri from requiring clear and convincing evidence of an incompetent person’s wishes as to withdrawal of life-sustaining treatment.34 If there were such evidence of the patient’s wishes, expressed when the patient was competent, the patient’s rights would outweigh the State’s interests in protecting life.35 While Ms. Cruzan’s prior statements did not amount to clear and convincing evidence of her intent, the case supports a constitutional right to refuse medical treatment in the form of artificially administered nutrition and hydration.36Cruzan does not require states to use a clear and convincing standard in determining a patient’s wishes as Missouri did, but it allows a state to use the higher burden of proof in order to place the risk of error on those seeking to terminate treatment.37

The majority’s recognition of the state’s interest in preserving life under the circumstances of the Cruzan case generated strong dissent. Dissenting opinions call into question the nature of “life” as an interest that the Constitution protects, and underscores the difficult philosophical and legal issues that cases of this nature present. In a much-quoted dissent, Justice Brennan observed:

“Medical technology has effectively created a twilight zone of suspended animation where death commences while life, in some form, continues. Some patients . . .prefer a plan of medical treatment that allows nature to take its course and permits them to die with dignity. . . .Highly invasive treatment may perpetuate human existence through a merger of body and machine that some might reasonably regard as an insult to life, rather than its continuation. . . . Nancy Cruzan is obviously ‘alive’ in a physiological sense. But for patients like Nancy Cruzan, who have no consciousness and no chance of recovery, there is a serious question as to whether the mere persistence of their bodies is ‘life’ as that word is commonly understood or as it used in both the Constitution and Declaration of Independence. . . .Lives do not exist in abstraction from persons, and to pretend otherwise is not to honor but to desecrate the State’s responsibility for protecting life.”38

According to the majority in Cruzan, evidence that rises to the level of clear and convincing triggers the Constitutional right of the patient. In Cruzan, the Court, in considering an argument that the state must accept the “substituted judgment” of the family, found that a state is not required to accept a substituted judgment of family “in the absence of proof that their views reflect the views of the patient.”39 The implication is that if there were proof (of a clear and convincing nature) that the family’s views reflected the patient’s, then the patient’s constitutional rights would be implicated. The family’s opinions alone are not relevant in a Constitutional analysis.

In 1997, the US Supreme Court again considered the limits of personal autonomy in the area of healthcare decisions when it considered two cases in which state laws that criminalized assisting suicide were challenged on Constitutional grounds. The Court declined to extend the reasoning in Cruzan to find a right to proactively end one’s life through assisted suicide, under either the equal protection or liberty guarantees.

In Vacco v. Quill, decided on equal protection grounds, the Court rejected the argument that New York’s ban on assisting suicide drew an unconstitutional distinction between those wishing to end their lives through refusing life-sustaining measures and those who wished to accomplish the same result through proactive means.40 Justice Rehnquist stated, “[W] hen a patient refuses life sustaining treatment, he dies from an underlying fatal disease or pathology, but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.”41 Rehnquist noted that, unlike a physician who respects a patient’s wishes to futile treatment or provides palliative care that has the effect of hastening death, a doctor who assists a suicide “must, necessarily and indubitably, intend primarily that the patient be made dead.”42

In Washington, four physicians and three patients sought a declaration that the State of Washington’s ban on “causing or aiding” a suicide was unconstitutional as violative of the liberty interest under the fourteenth amendment. 43 The US Supreme Court overturned a 9th Circuit Court of Appeals decision that found a constitutional right to die with the aid of a doctor.44 The opinion of the Court focused on “our nation’s history, legal tradition and practices” in concluding that the asserted “right” to commit suicide including the right to assistance in doing so is not a fundamental liberty interest.45 The Court distinguished the “constitutionally protected right to refuse lifesaving hydration and nutrition” as “grounded in the nation’s history and traditions, given the common law rule that forced medication was a battery, and the long legal tradition protecting the decision to refuse unwanted medical treatment.”46 The Court concluded that its holding permits the “earnest and profound debate about the morality, legality and practicality of physician-assisted suicide” to continue, “as it should in a democratic society.”47

However, while all nine justices agreed with the results in both cases, five justices, in concurring opinions, left open the possibility that an individual might have the right to assistance to end his or her life in particular circumstances. Justice O’Connor, in concurring opinions joined by Justices Ginsburg and Breyer, wrote that while she agreed that there was no “generalized right to commit suicide,” it was still open whether “a mentally competent person who is experiencing great suffering has a constitutionally cognizable interest in controlling the circumstances of his or her imminent death.”48 Justice Stevens stated he was “convinced that there are times when an interest in hastening death is entitled to constitutional protection49 and Justice Souter declined to find a fundamental right but accorded the claims “a high degree of importance,” requiring a commensurate justification.50 Justice Breyer added that the core interest at stake was better characterized as a “right to die with dignity” than a right to commit suicide with another’s assistance.51 Several justices emphasized the need for state legislative involvement.

In 2006, the Supreme Court considered a case that was “in part a product of the political and moral debate” that the Court encouraged.52 In Gonzales v. Oregon the Court held that the Bush administration could not stop the implementation of the Oregon Death With Dignity Act (ODWDA) through an Interpretive Rule that using controlled substances to assist suicide violates the federal Controlled Substance Act.53 The Court held that the scope of rulemaking authority under the Act does not extend to “declaring illegitimate a medical standard of care and treatment of patients that is specifically authorized under State law.”54 The Court found that Congress did not intend the Controlled Substance Act to “effect a radical shift of authority from the states to the federal government to define general standards of medical practice in every locality” or “alter the federal-state balance and the Congressional role in maintaining it.” 55

D. Lower Courts Interpret the Scope of Cruzan.

Courts have sought to apply the Cruzan holding to various fact patterns, against a backdrop of widely varying state laws governing advance directives and guardianship. The Cruzan case resulted in more states revising their advance directive laws to allow the expression of a preference regarding artificially administered nutrition and hydration. While the Court explicitly identified a “living will” as an example of clear and convincing evidence, it is not the only type of evidence that can be used to prove the patient’s wishes, as the case law consistently recognizes. Also, while Cruzan involved a patient in a “chronic vegetative state,” the right to refuse life-sustaining treatment applies to persons who are not terminally ill or in a chronic vegetative state, though some jurisdictions have required exceptionally strong evidence of an incompetent individual’s prior wishes in such circumstances.

Cruzan offers no guidance, other than its articulation of a state interest in preserving life, in situations involving people who have never been competent and thus never directly expressed wishes regarding life-sustaining treatment they wish or do not wish to have. Cases in many jurisdictions both prior to and since Cruzan have recognized the right of a guardian acting pursuant to state law to refuse life-sustaining medical treatment on behalf of a ward, including individuals incompetent from birth, utilizing a “best interests” standard.56 A “best interests” standard may take into account “such factors as the relief of suffering, the preservation or restoration of functioning, and the quality as well as the extent of life sustained” in cases where an individual was never competent or left no evidence of his/her prior wishes.57

The case law is consistent that healthcare providers and courts must look beyond advance directives in determining a patient’s wishes and right to refuse treatment. While Cruzan is clear that a state is not required to accept a substituted judgment of family without proof their views reflect the patient’s, the Delaware Supreme Court in, Matter of Tavel, found that a guardian had standing to invoke and vicariously assert the constitutional right of an incompetent ward using “substituted judgment” where the patient’s wishes were clearly established.58 Contrary to claims of the state, the Court found that the Delaware Living Will statute was “not intended to affect the rights of persons who do not choose to take advantage of its provisions,”59 and “a competent person’s right of self-determination cannot be eliminated by statute.” 60 According to the Court, “When a person has clearly expressed his or her prior intentions about a course of treatment in the event of incompetency, those intentions should be respected.”61

In the absence of an advance directive, courts have required very specific evidence of a patient’s previously expressed wish to forego life-sustaining treatment when the patient is not near death, in pain or in a chronic vegetative state. In In re Michael Martin, decided in 1995, the Michigan Supreme Court reversed a lower court’s order authorizing the withdrawal of artificial nutrition and hydration from a young man, paralyzed from an accident, who was incompetent but able to interact with others and his environment to a limited extent. 62 Prior to his accident, he had made statements to his wife and co-workers that he would not want to live “like a vegetable” or be totally dependent on machines.63 The Court found that “the amount of weight accorded to prior oral statements depends on the remoteness, consistency, specificity and solemnity of the prior statement.”64 In 2001, the California Supreme Court reached the same result in Conservatorship of Wendland, finding that for “mentally incompetent patients who remain conscious,” there must be “clear and convincing evidence that the conservatee would desire to have his life-sustaining medical treatment terminated under the circumstances in which he now finds himself.”65 Comments about not wanting to be kept as a vegetable or on a respirator were found not sufficient evidence of the patient’s wishes, where the patient “was not terminally ill, in a persistent vegetative state or comatose.”66

States cannot require an advance directive in order for a patient to exercise his or her constitutional right to refuse life-sustaining treatment. In San Juan-Torregosa et al. v. Garcia et al., decided in 2002, the Tennessee high court reversed a lower court order that compelled the continuation of artificial nutrition and hydration due to the patient’s failure to execute an advance directive, as required by state statute, despite a finding by clear and convincing evidence that such treatment was contrary to the patient’s wishes.67 Citing Cruzan, the common law right to refuse treatment and the “historic commitment by the citizens [of Tennessee] to individual liberty and freedom from interference in their personal lives” embodied in the state constitution, the Tennessee high court reversed, noting that “Courts have the duty to protect and when necessary enable individuals to exercise his or her Constitutional Rights.” 68

In 2006, an Oklahoma Attorney General Opinion found that an Oklahoma statute limiting the withholding or withdrawal of life-sustaining treatment to instances in which the declarant has a terminal condition or is permanently unconscious was unconstitutional, to the extent it limited an individual’s constitutionally protected right to refuse artificially administered nutrition and hydration to those limited circumstances.69 The opinion further stated that a properly executed non-statutory “Five Wishes” form, allowing the declarant to express his or her preferences in broader circumstances than the state form, would give the attending physician knowledge that a patient gave informed consent to the withholding and withdrawal of artificial nutrition and hydration and would be as “compelling to medical providers as a statutory advance directive or a person’s verbal declarations.”70

When constitutional rights are predicated upon personal autonomy, an incompetent individual who was never competent or who left no indication of his or her wishes is in a precarious position. In 2004, the US Court of Appeals for the Second Circuit, in Blouin v. Spitzer, found no clearly established constitutional right to refuse treatment on behalf of a former resident of a state institution who was incompetent since childhood. 71 In a particularly unsettling set of facts, the state, through the attorney general’s office, instructed a hospital to administer artificial hydration to a woman unable to accept artificial nutrition, and to continue the treatment, contrary to the wishes of her family, even after it was “apparent that the treatment was causing intense pain without medical benefit and worsening her condition.”72 New York state law at the time provided no mechanism for a family member to be appointed her guardian.73 The attorney general’s position was that since the patient was never competent to express her intentions, no one had the authority to instruct that the administration of hydration be stopped.74 The state persisted in demanding treatment even after the treating physician and an ethics consultant found such treatment to be outside the bounds of accepted medical practice, noting that the treatment was “increasing pain and suffering,” causing a “slow and lingering death from protein malnutrition” and was “inhumane.”75

In upholding the dismissal of a claim under 42 USC sec. 1983 against the New York attorney general and his assistant, the Circuit Court held that the plaintiff “has not demonstrated that clearly established federal law barred the defendants from effectuating the state’s interest in prolonging the life of one of its citizens, whatever its quality” (emphasis added).76 The court found that “while Blouin is right to assert that the Constitution supports a right to reject life-sustaining medical treatment as a function of the fundamental right to bodily integrity under the Due Process Clause,” per Cruzan, “it does not follow from this, as Blouin argues, that an incompetent person whose death is imminent has a constitutional right to have a surrogate make critical medical decisions, including a decision to withdraw life support. While the former proposition finds support in case law, the latter does not and, as a consequence, is not ‘clearly established.’”77 (A necessary component of a sec.1983 action.)

E. The Right To Refuse Treatment under the New Hampshire Constitution

The right to refuse treatment has been recognized and analyzed as both a liberty and privacy interest under the New Hampshire Constitution. The state constitution has been held to provide a strong right of privacy and greater protection of individual rights in a variety of circumstances to those accused of crimes than is provided under the US Constitution. 78 Moreover, in the context of civil causes of action, an individual’s privacy interest has been given significant weight.79 The New Hampshire Supreme Court has considered the right to refuse medical treatment in a variety of contexts, including artificial nutrition and hydration.

In Opinion of the Justices the Court was asked to give an opinion relative to proposed legislation to relax requirements for allowing the administration of compulsory medications to psychiatric patients committed for temporary involuntary emergency hospitalization.80 Citing the due process clause of the New Hampshire State Constitution, NH Const. Pt. I, art.15, the Court found that “the right of mentally ill persons to refuse medical treatment is a liberty interest which is protected by our State Constitution.”81 The Court identified two “legitimate State interests” that may override the patient’s right to refuse treatment; the State’s “interest in protecting the individual or others from harm” and “the State’s interest, as parens patriae, in caring for persons unable to care for themselves.”82 According to the Court, “a finding of incompetency is required prior to the State’s exercise of its parens patriae power to administer compulsory medical or psychiatric treatment,” and “due process mandates the imposition of certain procedures for determining whether the patient is incompetent and, if so, whether the proposed treatment should be administered.”83

The Court drew an important distinction between the state’s power to hospitalize and to treat in an emergency. While an emergency may justify hospitalization based on a finding of probable cause by a district court in accordance with RSA 135-B:23, this finding is not sufficient to indicate that an emergency exists that would justify the state’s power to administer compulsory medical treatment.84 The Court has, in subsequent cases, recognized a liberty interest in refusing treatment in the context of the compelled treatment of an individual found not competent to stand trial (where treatment was permitted within limits for the purpose of restoring competency) 85 and in ruling that a woman with mental illness could not be deprived of her personal liberty through an involuntary commitment without clear and convincing proof of her dangerousness, consisting of specific acts or actions. 86

In In re Caulk, decided in 1984, the Court recognized a right to privacy, citing NH Const. Pt. 1, arts. 2 and 3, as a “fundamental constitutional right” that was implicated when an otherwise healthy prison inmate who had voluntarily stopped eating with the intention of causing his own death asserted the right to die without intervention.87 The trial court ordered that he be nourished over his objection, and transferred without ruling the question of his constitutional right to die without interference by the state.88

The Court recognized that, under the state constitution, “individuals have a constitutional right of privacy, arising from a high regard for human dignity and self-determination, and that this right may be asserted to prevent unwanted infringements of bodily integrity” that can be limited “only when a compelling state interest is involved.”89 The Court found that Mr. Caulk’s right to privacy90 under the state constitution was implicated, and that “the defendant did not completely forfeit his state constitutional right to privacy by reason of his incarceration, but rather subjected himself to state interests unique to the prison.”91 The state argued that “the defendant’s actions seriously undermine its obligations to maintain an effective criminal justice system with respect to both the investigation and prosecution of crimes and to the incarceration of convicted criminals.”92

The Court found that “the State’s interests in the preservation of human life and the prevention of suicide are also implicated in this situation.”93 The Court observed that while suicide is not criminalized in New Hampshire, it is a crime to aid or abet the commission of suicide, and the legislature has provided for involuntary commitment proceedings when an individual presents a serious likelihood of danger to himself or others.94 The Court held that “in balancing this prisoner’s right to privacy under the State Constitution with the State’s interests in maintaining an effective criminal justice system and in preserving life, the State’s interests must prevail.”95 Despite Mr. Caulk’s assertion that he was “not committing suicide but rather is allowing himself to die,” the Court distinguished the situation from one in which “an individual, facing death from a terminal illness, chooses to avoid extraordinary and heroic measures to prolong his life, albeit for a short duration.96 Rather, the defendant has set the death-producing agent in motion with the specific intent of causing his own death . . . and any comparison of the two is superficial.” 97

The emphasis of the New Hampshire Court in Caulk on causation and intent was followed by the US Supreme Court in Vacco v. Quill, which upheld the State of New York’s ban on assisting suicide in 1997.98 It is significant, however, that the New Hampshire Supreme Court recognized that a constitutional right was implicated in Mr. Caulk’s actions, which the Court viewed as more comparable to a suicide than to an ill person refusing medical treatment. In contrast, the US Supreme Court in Washington, failed to recognize a fundamental right at all in the context of assisted suicide, leading to a conclusion that the state constitution provides greater protection in circumstances involving a person’s decision to control the timing or manner of his death than has, to date, been recognized under the US Constitution.99

In 1986, four years before Cruzan, the New Hampshire Supreme Court considered the case of In re: Doris M. Terry, which presented the issue of the Probate Court’s authority to authorize a guardian to order removal of a nasogastric tube in the case of a ward in a chronic vegetative state.100 The Court remanded the case back to the Probate Court with ten questions to answer before the Court would issue a ruling.

“1. Was the patient, Doris Terry, legally competent before her hospitalization? If so, what if any expression of preference did she make about the application or withholding of procedures to sustain her life in the event she should become incompetent to accept or reject such procedures?

2. If she made such an expression, under what circumstances did she do so, with what knowledge of options and their likely effects upon her, and to whom?

3. If she expressed a preference for withholding such procedures under any conditions, did she make any distinction between procedures for medical treatment or the administration of medication, as distinguished from procedures for providing nourishment?

4. What ethical standards would the physicians concerned with this case apply in determining whether the nasogastric tube should be withdrawn and what facts do they rely upon in their recommendations for or against its withdrawal?

5. If the tube should be withdrawn, what effects would follow from withdrawal of nourishment and what effects would follow from the withdrawal of water?

6. To what extent would Mrs. Terry be aware of these effects?

7. What reasons, if any, would support the withdrawal of water as well as nourishment?

8. If either water or nourishment should be withdrawn, what medical care would be extended to the patient?

9. If any individual or institution listed below has expressed a preference or opinion about what should be done in this case, what would be the financial consequences to that person or institution, how important would those consequences be, and to what degree does the anticipation of those consequences influence the expression of preference:

1. The patient’s family relations

2. The physicians involved in the case

3. The attorney-guardian ad litem for the patient

4. The hospital

10. If the tube is not removed, what is the prognosis and who will bear the cost of Mrs. Terry’s maintenance?”101

Mrs. Terry died before the questions could be answered, or any constitutional issues analyzed by the Court. However, in 1985, a year before Terry was decided, the New Hampshire legislature had enacted a “Living Will” statute, consistent with the national trend of creating legal mechanisms for individuals to express their wishes relative to life-sustaining procedures in advance of incapacitating medical conditions.102 Further legislative enactments and refinements would follow, including a statutory framework for durable powers of attorney for health care in 1991.103 In 1994, the legislature clarified the authority of the Probate Court by amending RSA 464-A:25 I to explicitly allow a guardian to withhold consent for life-sustaining treatment provided the guardian had been authorized to consent to treatment.104 The legislature has not established standards specific to foregoing life sustaining treatment under the guardianship statute, so the questions identified by the Court in Terry continue to provide guidance.

II. Diverse Views on Artificial Nutrition and Hydration and Their Impact on Public Policy and Health Care

Laws authorizing advance directives were motivated by strong public sentiment favoring a legal mechanism to avoid having one’s life artificially maintained or prolonged. However, the withdrawal or withholding of artificial nutrition and hydration continues to be controversial. Religious beliefs limit the circumstances under which they may be discontinued in health care facilities affiliated with religious organizations, and affect the development of public policy. Political opposition to current law and practice, fueled by publicity over the Terri Schiavo case, has led to recent efforts in many states to restrict the authority of guardians and agents to refuse life-sustaining treatment on behalf of incompetent individuals.

A. The Terri Schiavo Case

The Terri Schiavo case involved a protracted legal battle, spanning a 12-year period, between the husband/ guardian of Terri Schiavo and her parents over his request on her behalf to discontinue artificial nutrition and hydration.105 Ms. Schiavo was found to be in a persistent vegetative state.106 The case was a typical guardianship matter involving no novel legal issues, but is significant due to its political ramifications. In 2000, the Circuit Court for Pinellas County Florida Probate Division authorized the removal of artificial nutrition and hydration based on a finding, by clear and convincing evidence, that this was consistent with the patient’s previously expressed wishes.107 The case was appealed, and in 2003 the Florida Supreme Court declined to hear an appeal of the District Court of Appeals upholding the Probate Court decision.108 Following this decision, the Florida legislature passed legislation in an attempt to override the Court rulings, but it was found unconstitutional on separation of power grounds, which the US Supreme Court refused to review.109

The US Congress passed a Special Act allowing the parents of Terri Schiavo to bring an action in federal court to hear their claims de novo.110 The House returned from its Easter recess for a special session to vote on this Act.111 At that time the feeding tube had already been removed pursuant to a previous state court order, and the Federal District Court declined to issue an injunction due to the petitioners’ failure to demonstrate a likelihood of success.112 Efforts at appeal to the 11th Circuit and the US Supreme Court were unsuccessful.113 During the many years of litigation the feeding tube had been removed three times and reinserted twice.114 While the parents consistently lost on the issues in the Courts, the case engaged the media and politicians at every level, including the President, Governor of Florida, Congress and anti-abortion and religious organizations in a debate over the circumstances under which proxies or Courts should be allowed to authorize the removal of artificial nutrition and hydration on behalf of incompetent individuals.115

A March 20, 2004 address of Pope John Paul II116 was widely interpreted as narrowing the circumstances under which the Roman Catholic Church would find removal of artificial nutrition and hydration to be morally acceptable.117 The Church’s position on this issue118 has implications for the care and treatment provided at Catholic hospitals and nursing homes and their willingness to follow advance directives relative to artificial nutrition and hydration. The “Ethical and Religious Directives for Catholic Health Care Services” issued by the United States Conference of Catholic Bishops provide that a Catholic institution “will not honor an advance directive that is contrary to Catholic teaching.”119 A report on a survey of administrators of Catholic health care facilities conducted by the Catholic Health Association noted that respondents cited the March 2004 Papal allocution as one of the challenges they expect to face in the future.120

In New Hampshire, a letter from the Bishop of Manchester to the members of the New Hampshire House, dated February 9, 2006, reflected the recent changes in the Church’s perspective on these issues and potential public policy implications. “You may know that my predecessor, the late Bishop Leo E. O’Neil, supported the enactment of the current state law regarding living wills and durable powers of attorney for health care (RSA 137-J) in 1991. Many developments in health care and in the understanding of our moral obligations in regard to human life make this law problematic today.”121 The Diocese submitted legislative testimony expressing concern that “a person who is permanently unconscious may have life-sustaining treatment withheld or withdrawn for no reason other than that the person is permanently unconscious.”122 Changes in statutory language were suggested to limit circumstances in which such treatment could be withheld or withdrawn. 123 While the suggested changes were not adopted, it is likely that similar changes will be proposed in future policy debates.

Within a year of the death of Terri Schiavo, proposed legislation was filed in 23 states to restrict the ability of agents and guardians to forego life-sustaining treatment.124 Many of these bills would create a presumption that an incompetent person would have wanted artificial nutrition and hydration unless the individual executed an advance directive “specifically rejecting nutrition and hydration in the applicable circumstances.”125

House Bill 656 was introduced in New Hampshire in the 2005 legislative session primarily to create more user-friendly forms and establish a process to assure that “Do Not Resuscitate” (DNR) Orders were honored when patients moved from one health care setting to another. These were some of the issues identified during a five-year Robert Wood Johnson Grant to improve end-of-life care as barriers that could prevent individuals from executing advance directives or having their wishes respected.126 However, the first hearing occurred shortly before Terri Schiavo’s death, resulting in extremely emotional hearings, debates and numerous changes to the proposed legislation reflecting different philosophies and values as it moved back and forth between legislative bodies.127

III. RSA Chapter 137-J: Written Directives for Medical Decision Making for Adults without Capacity To Make Health Care Decisions

Effective January 1, 2007, the statutes authorizing living wills and durable powers of attorney for health care were recodified into a single, unified statutory scheme governing both types of advance directives and do-not-resuscitate orders.128 RSA 137-J:1,I affirms that “a person has a right, founded in the autonomy and sanctity of the person, to control the decisions relating to the rendering of his or her own medical care.” RSA 137-J:6 requires an agent to act “in accordance with the agent’s knowledge of the principal’s wishes and religious or moral beliefs,” or if unknown, “in accordance with the agent’s assessment of the principal’s best interests and in accordance with accepted medical practice.”

A. New Provisions Suggest Limitations on an Agent’s Authority

New statutory language suggests conditions or restrictions on an agent’s authority that did not exist in prior law. Some changes are the result of incorporating language from the more restrictive former “living will” statute into the new statute. The “living will” statute was limited to “terminal illness” or a “permanently unconscious” condition as certified by two physicians,129 whereas the statute governing durable powers of attorney contained few limitations on the agent’s authority to make any and all health care decisions that the principal could make. 130 A number of provisions in the new statute suggest limitations on an agent’s authority to refuse life-sustaining treatment to situations where the principal is “near death” or “permanently unconscious.”131 Specific authority is required for an agent to consent to a DNR order.132 While the former statute did not contain these limitations, the standard options set forth in the statutory form made reference to situations of terminal illness and permanent unconsciousness, so the notion of such limitations is not entirely new.

To resolve any ambiguities, provisions in question must be interpreted in a manner consistent with the overall purpose and policy of the statute as it pertains to durable powers of attorney for health care and reconciled with the constitutional rights of the principal. 133 If a provision is interpreted in a manner that would require treatment that the patient, while competent, clearly stated he or she did not want, constitutional issues arise. The distinction between patients who are “near death” or “permanently unconscious” and others is not relevant in the constitutional analysis, where the right to refuse treatment is not and has never been limited to those circumstances. Similarly, the right to refuse artificially administered nutrition and hydration is not, under a constitutional analysis, distinguishable from other forms of medical treatment, despite its religious significance for some.

As in the past, the statutory form sets forth specific statements to which an individual can assent in order to give (or decline to give) their agent the authority to withdraw or withhold life-sustaining treatment in the event of terminal illness or permanent unconsciousness.134 The statutory form that existed prior to 2007 and the current form provide the opportunity for the principal to give additional instructions, including “any specific desires or limitations you deem appropriate, such as when or what life-sustaining treatment you would want used or withheld, or instructions about refusing any specific types of treatment that are inconsistent with your religious beliefs or are unacceptable to you for any other reason.”135

Clear evidence of the principal’s intent may be required in those circumstances where the principal is not terminally ill or permanently unconscious, and an agent seeks to forego treatment where to do so may hasten the principal’s death. Given the recent statutory changes incorporating more restrictive language, it is important that attorneys discuss with their clients the possibility that healthcare providers may interpret the agent’s authority more narrowly than intended unless the principal is very clear as to the authority that the agent is being given. Specifically if the principal wants the agent to have the authority to refuse treatment, including medically administered nutrition and hydration, in contexts other than when the principal is “near death” or “permanently unconscious,” the principal should express this as clearly as possible in the section of the form allowing additional instructions. Beyond advance directives, the ethical obligations of physicians to their patients, discussed below, provide guidance when difficult decisions must be made.

B. Treatment Provided over the Objection of the Principal

RSA 137-J:5 IV, allows the principal to elect to allow treatment to be given or withheld over the principal’s objection if the advance directive includes a statement to that effect initialed by the principal. This provision operates as a waiver of the principal’s right to refuse (or consent to) treatment and/or the principal’s right to the due process embodied in the guardianship process.136 A waiver “is ordinarily an intentional relinquishment or abandonment of a known right or privilege.” 137 A waiver or acquiescence in the loss of a fundamental right cannot “be presumed nor may it be lightly inferred.”138

A principal who agreed to allow treatment to be given or withheld over his objection may be able to avoid the consequences by simply revoking the advance directive. The provisions set forth in RSA 137-J:15 for revocation of an advance directive do not prohibit a principal from revoking after a doctor finds the principal to be incapacitated to make healthcare decisions. The mandatory disclosure statement in RSA 137-J:20 informs the principal of the right to revoke by so informing the agent or health care provider.139 RSA 137-J:22 (b) allows the principal or another person interested in the principal to initiate a court action challenging the authority of an agent to act. The circumstances surrounding the execution of an advance directive, including how the provisions allowing treatment over the principal’s objection were explained to the principal, will likely be critical in the event a dispute arises over an attempt to treat a principal over his or her objection.140

IV. Responsibilities of Physicians to Their Patients

A. Advance Directives and Medical Ethics

Advance directives should complement the obligations of health care practitioners to their patients and families. Advance directives, in New Hampshire as in other states, have limitations in their usefulness as expressions of a patient’s wishes, as statutory forms do not address the vast range of health care decisions that may present. The statute governing advance directives is not to be construed to “supplant any existing rights and responsibilities under the law of this state governing the conduct of physicians or ARNPs in consultation with patients or their families or legal guardians in the absence of an advance directive.” 141

The AMA Code of Medical Ethics establishes ethical principles that guide physicians in the decision-making process when life-sustaining treatment is under consideration. The Code defines life-sustaining treatment as any treatment that services to prolong life without reversing the underlying medical condition.142 The New Hampshire Board of Medicine requires that licensees adhere to the “Principles of Medical Ethics – Current Opinions with Annotations” as adopted by the American Medical Association.143 Violations constitute unprofessional conduct within the meaning of RSA 329:17, VI(d).144 The Code of Medical Ethics provides that “physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. This includes providing effective palliative treatment even though it may foreseeably hasten death. Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgment or best interest analysis.”145

Physicians have an obligation to discuss advance care planning with patients.146 Physicians should use a range of orders to indicate patient wishes regarding avoidable treatments that might otherwise be provided.147 Patients and physicians are encouraged to use “advisory documents,” which aim to accurately represent a patient’s wishes in specific situations that a physician should follow, in addition to or in conjunction with any advance directive. 148

AMA Ethics Opinion E-2.20 provides that if a patient receiving life-sustaining treatment is incompetent, a surrogate decision-maker should be identified. When there is no advance directive designating a proxy, the code provides that the family or persons close to the patient should become surrogate decision makers. While health care providers have historically permitted family members to make medical decisions under such circumstances, there is no New Hampshire statute or case law explicitly recognizing a common law right of a family member to make medical decisions, as is the case in other states.149 Therefore, any informal process of family decision-making must not conflict with the presumption of competency or the constitutional rights of the patient as discussed above. If there is disagreement as to the patient’s wishes or “best interests” or the patient is likely to experience a period of prolonged incompetency, in the absence of an advance directive a guardianship should be pursued.

The code contemplates that decisions be made “based on substitute judgment (what the patient would have decided) when there is evidence of the patient’s preferences and values.”150 Otherwise, a decision is based on the best interests of the patient, weighing the harms and benefits of various treatment options.151 When there are disputes or questions about whether the decision reflects the patient’s preferences or best interests, doctors are encouraged to seek guidance from ethics committees, and utilize the Court as a last resort.152

Hospitals are obligated to provide ethics consultation services. 153 Many hospitals have established ethics committees. Their role is to assist in resolving ethical problems by utilizing the guidance set forth in the Code, and not to impose any obligation on any party to accept a committee’s recommendation.154 “Physicians are not ethically obligated to deliver care that, in their best judgment, will not have a reasonable chance of benefiting their patients” (sometimes referred to as “futile care”).155 In assessing futility, physicians should follow a “due process” approach that takes into account “a patient or proxy’s assessment of worthwhile outcome” and “the physician’s intent in treatment, which should not be to prolong the dying process without benefit to the patient or others with legitimate interests.”156 A process is to be followed that seeks to reach resolution acceptable to all parties, with involvement of the ethics committee if necessary. If resolution is not reached, transfer to another physician or facility should be attempted, but ultimately the treatment need not be offered.”157

It is well established among ethicists, clinicians and courts that artificial nutrition and hydration is “a medical treatment that patients or their surrogates may accept or refuse on the basis of the same considerations that guide all other treatment decisions: the potential benefits, risks, and discomfort of the treatment and the religious and cultural beliefs of the patients or surrogates.”158 Ethical decision-making is compromised if statutes mandate artificial nutrition and hydration without sufficient flexibility to consider the medical needs of specific individuals in all of the clinical situations and personal circumstances that could exist. According to medical literature, artificial nutrition and hydration does not improve survival rate in some situations (such as advanced dementia) but often requires the use of physical restraints and may present considerable risks and discomfort, including difficulty breathing, choking, diarrhea and gastrointestinal discomfort.159 “Because artificial nutrition and hydration is associated with uncertain benefits and substantial risks, it is essential to ensure that decisions about its use are consistent with the patient’s medical condition, prognosis and goals of care.160

The most legally and ethically sound process of decision-making, with regard to artificial nutrition and hydration, allows decisions to be made the same way in which decisions about other medical treatments are made.161 Through a “comprehensive informed consent process . . . physicians should explain the potential benefits of artificial nutrition and hydration for a patient, as well as its risks and discomfort and all relevant alternatives, just as they would for other health care decisions.”162 Once information is presented to the patient, agent or guardian in an unbiased way, he or she will be able to accept or refuse treatment in a manner consistent with the patient’s religious beliefs, values and known preferences. Similar considerations must guide decisions regarding do-not-resuscitate orders.163

The wishes of patients would be carried out more reliably and many ethical dilemmas and litigation avoided through better discussions between physicians and patients about advance care planning and documentation of patient preferences. Wishes expressed orally during such conversations can be valuable evidence, regardless of whether an individual has an advance directive. Unfortunately, the health care system does not encourage such discussion and little typically occurs.164

B. Careful Drafting of Advance Directives Is Essential

Statutory biases favoring life-sustaining treatment run counter to the opinions of most Americans, according to many public opinion polls conducted over the years and in response to the Schiavo case.165 This suggests that attorneys must be sensitive to any presumptions or limitations in the current statute, or that might be imposed in the future, that may be at odds with their clients’ wishes. To serve clients in a competent manner, attorneys must assume that supplemental instructions will be needed in most cases, and an understanding of the clients constitutional rights, as well as their values and beliefs relative to an acceptable quality of life and all forms of life-sustaining treatment, is essential to craft language most likely to reflect their wishes and help assure they will be respected.

Proper advance care planning with health care providers can overcome limitations in advance directive forms that are not, without being supplemented in some way, adequate to document an individual’s choices for medical interventions near the end of life or in the event of other incapacitating situations. 166 Several organizations have developed forms that assist patients in assuming greater control of medical treatment decisions by expressing their preferences relative to a variety of medical conditions and treatment options, generally not covered by the statutory forms. These include the “Five Wishes” form, 167the Project GRACE Advance Care Plan168 and the Medical Directive form developed by Dr. Ezekiel J. Emmanuel and Dr. Linda L. Emmanuel.169 These forms should be binding on providers, assuming expressions of wishes are within the bounds of accepted medical practice. In addition, any of these documents or portions of them may be incorporated into the New Hampshire Statutory form or attached and incorporated by reference. In addition, the Advance Care Planning Guide produced by the New Hampshire Foundation for Healthy Communities contains copies of the statutory form (with a few revisions to make the form more consistent with the statute), and helpful information about advance care planning, choosing an agent and frequently asked questions.170

V. Conclusion

Political debates surrounding life-sustaining treatment are likely to intensify in coming years. As the population ages, patients and their advocates can be expected to push the limits of personal autonomy and demand the right to control their medical care and treatment and the circumstances of their deaths more aggressively, while others seek to assert greater control and restrictions over the authority of agents, the practice of medicine and the discretion of courts to forego life-sustaining measures.

Sadly, the hope of the New Jersey Supreme Court in Quinlan, expressed in the face of “modern technological marvels hitherto unthought-of” that decisions to remove life support would in the future be made privately, by families in cooperation with trusted physicians, with litigation as a last resort, seems a quaint dream as legal developments move in the opposite direction. Courts will increasingly become a part of the death experience if families must obtain court orders to avoid statutorily-mandated medical procedures, or doctors are subject to conflicting duties and obligations that confuse them to the point that they feel a need to seek the protection of a court order, even when the patient’s wishes are known. Health care providers must be more diligent to document, in detail, conversations with patients about desired care and treatment to avoid presumptions that could lead to pressure to violate a patient’s wishes or provide care that raises ethical concerns.

Attorneys must be knowledgeable about the framework upon which patients’ rights are based, in order to assist them in drafting advance directives that clearly reflect their wishes and the authority they wish their agents to have and, if necessary, to advocate for their right to have their wishes honored. Effective advocacy will require more detailed discussions of a client’s wishes than was typical in the past, and more care will be required to personalize advance directives in order to overcome any possible statutory biases and presumptions that currently exist or might exist in the future.

ENDNOTES

1. The author would like to thank David Hall, third-year law student at the Franklin Pierce Law Center, for his research assistance for this article, and acknowledge the late Cindy Lonergan, whose passion and dedication to the rights of patients in the health care system inspired this article. Information on contributions to the Cindy Lonergan Elder Law and Patients’ Rights Fellowship, established in her memory, may be obtained from Gayle Mazalewski, Director of Development, Franklin Pierce Law Center at (603) 228-1541 x 1189 or gmazalewski@piercelaw.edu.

2. For purposes of this article, life-sustaining treatment refers to “any treatment that serves to prolong life without reversing the underlying medical condition” as provided in the AMA Code of Medical Ethics. American Medical Association, Council on Ethical and Judicial Affairs, Code of Medical Ethics, Opinion E-2.20 Withholding or Withdrawing Life-Sustaining Treatment (updated June 1996), available athttp://ama-assn.org/ad-com/polfind/hlth-ethis.pdf .

3. 141 U.S. 250 (1891)

4. Id. at 250.

5. 105 N.E. 92 (N.Y. 1914)

6. Id. at 93

7. William R. Long, Informed Consent: The Evolution of an American Value, athttp://www.drbilllong.com/CurrentEventsVI/Consent.html (January 21, 2006)

8. Joseph Fletcher, “Morals And Medicine: The Patient’s Right To Know The Truth; Contraception; Artificial Insemination; Sterilization; Euthanasia” 34-64 (Princeton University Press, 1954) “The patient has a right to know the truth. We are morally obligated to pay others the rights due them. Therefore a doctor is obligated to tell the truth to his patient. He owes the patient the truth as fully and as honestly as he owes him his skill and care and technical powers.” Id. at 36. Fletcher argued that misrepresenting or withholding facts are “acts of theft because they keep from the patient what is his (the truth about himself), or acts of injustice because they deny to another what is his due as a free and responsible person.” Id. At 45-46. Joseph Fletcher has been described as the “first academically-trained ethicist dealing with medical issues in our culture.” William R. Long, supra note 7.

9. Fletcher, supra note 8, at 46.

10. Fletcher, supra note 8, at 53.

11. Margaret A. Berger & Aaron D. Twerski, Uncertainty and Informed Choice: Unmasking Daubert, 104 Mich. L. Rev. 257. “In order for a plaintiff to establish a prima facie case that she has been deprived of informed consent she must show (1) that a physician failed to disclose a material risk of the therapy taken or a reasonable alternative to it (materiality); (2) that the patient would have chosen against the recommended therapy (decision-causation) and (3) that as a result of the therapeutic intervention the plaintiff sustained injury (injury-causation).” Id. at 270. See, e.g., Canturbury v. Spence, 464 F.2d 772 at 787-91(D.C. Cir. 1972). Cert. Denied, 409 U.S. 1064 (1972).

24. The right to privacy, as articulated by the US Supreme Court in Griswold v. Connecticut, 381 U.S. 479, 485 (1965) and Roe v. Wade, 431 U.S. 113, 153 (1973), has provided a basis for the right to refuse medical treatment as reflected in many state court holdings, though the U.S. Supreme Court in 1990 in Cruzan applied a Fourteenth Amendment liberty analysis in recognizing the right to reject life-sustaining treatment under the U.S. Constitution. Cruzan, 497 U.S. at279 n. 7. The Court in Quinlan found the right to privacy to encompass a patient’s decision to decline medical treatment under certain circumstances, and in the case before it, found that “Karen’s choice, if she were competent to make it, would be vindicated by the law” and “should not be discarded solely because her condition prevents her conscious exercise of the choice” Quinlan, 355 A.2d. at 664.

35. “The liberty guaranteed by the Due Process Clause must protect, if it protects anything, an individual’s deeply personal decision to reject medical treatment, including the artificial delivery of food and water.” Cruzan, 497 U.S. at 289 (O’Connor, J., concurring); also seeGlucksberg, 521 U.S. 703 (“The constitutionally protected right to refuse lifesaving hydration and nutrition that was discussed in Cruzan, supra, at 279, was not simply deduced from abstract concepts of personal autonomy, but was instead grounded in the Nation’s history and traditions, given the common-law rule that forced medication was a battery, and the long legal tradition protecting the decision to refuse unwanted medical treatment.” ) and 720 (“We have also assumed, and strongly suggested, that the Due Process Clause protects the traditional right to refuse unwanted lifesaving medical treatment.”)

52. Id. slip op. at 1-2. The ODWDA exempts from civil or criminal liability state-licensed physicians who, in compliance with specified safeguards, dispense or prescribe a lethal dose of drugs upon the request of a terminally ill patient.

53. Id. slip op. at 11.

54. Id. slip op. at 28.

55. SeeSuperintendent of Belcherton State School v. Saikewicz, 370 N.E.2d 417 (Ma. 1977) (withholding of chemotherapy from a profoundly-retarded 67-year-old man suffering from leukemia); Rasmussen by Mitchell v. Fleming, 741 P.2d 674 (Ariz. 1987) (authorizing procedures for the removal of a feeding tube from a patient in a persistent vegetative state).

63. “Only when the patient’s prior statements clearly illustrate a serious, well thought out, consistent decision to refuse treatment under these exact circumstances, or circumstances highly similar to the current situation, should treatment be refused or withdrawn.” Id.at 411.

77. In State v. Settle, 122 NH 214 (1982) (recognizing greater protection under the state constitution in the context of searches and seizures), the Court states: “Our constitution often will afford greater protection against the action of the State than does the Federal constitution . . . Previously, we have held that the protection against double jeopardy, found in N.H. CONST. pt. 1, art. 16, is greater than that provided by the Federal constitution, compareState v. Hogg, 118 N.H. 262, 263—67, 385 A.2d 844, 845—47 (1978) withBartkus v. Illinois, 359 U.S. 121, 136 (1959), and that, contrary to the federal practice, the reasonable doubt standard must be used by the trial judge when ruling on the voluntariness of a defendant’s confession. CompareState v. Phinney, 117 N.H. 145, 146, 370 A.2d 1153, 1154 (1977) withLego v. Twomey, 404 U.S. 477, 486—87 (1972).”

78. SeeRemsburg v. Docusearch, Inc., 149 N.H. 148 (2003) (finding a duty of an investigator to exercise reasonable care in disclosing a third person’s personal information, recognizing a cause of action for intrusion upon seclusion predicated on the disclosure of a social security number and liability under the Consumer Protection Act on the use of deceit to obtain employment information.)

79. 123 NH 554 (1983).

80. Id. at 560 (1983).

81. Id. at 560.

82. Id at 561.

83. “In finding probable cause for involuntary emergency hospitalization, a court determines that there is probable cause to believe that the person sought to be hospitalized is ‘in such a mental condition as to pose a strong likelihood of harm to himself or others.’ RSA 135-B:19 (Supp. 1981)” Id.

84. In Petition of Bahmer, No. 2002-678 (NH June 13, 2002), the Court considered the constitutionality of RSA 135:17-a, allowing compelled treatment of an individual found not competent to stand trial for the purpose of restoring his competence. The Court recognized “the state’s interest in prosecuting, convicting and punishing those who violate the law is compelling,” and will override a defendant’s liberty interest in refusing compulsory medical treatment if the Court finds, by clear and convincing evidence (1) that treatment is medically appropriate, (2) that it is necessary to restore the defendant to trial competence, (3) that the defendant can be fairly tried while under the medication and (4) that trying the defendant will serve an important government interest.”

85. In Matter of B.T., 153 NH 255 (2006), the Court found that a woman with mental illness could not be deprived of her personal liberty through an involuntary commitment under RSA Chapter 135-C without clear and convincing proof of her dangerousness, consisting of specific acts or actions. While B.T. was noncompliant with taking medications prescribed for her mental illness, the resulting symptoms of “agitation, delusion, disorganized thinking and paranoia” were found by the Court to be “insufficient to prove by clear and convincing evidence that B.T. poses a serious likelihood of danger to herself or to others.” Id. at 261-62.An overdose that occurred five years earlier was found to be “neither recent nor similar to the events that gave rise to the petition, and therefore had insufficient probative value for determining her future dangerousness.” Id. at 262. According to the Court, the standard of clear and convincing evidence is significant because “[t]he private interests at stake in civil commitment proceedings, loss of liberty and social stigmatization, are substantial.” Id. at 260.

86. In re Joel Caulk, 125 NH 226 (1984).

87. Id. at 228.

88. Id. at 230 - 231.

89. The defendant had also asserted rights to religious freedom, freedom of speech, and the right to be free from cruel and unusual punishment. While the Court failed to find factual support for implicating these rights were present, the Court indivated that the analysis would be the same. Id at 229.

94. Id. at 232. In his dissent, Justice Douglas argued that the State had not demonstrated a compelling state interest so as to override Mr. Caulk’s “fundamental right to fast until his natural death without government intervention . . . Mr. Caulk, in an expression of his dignity, personal autonomy and self-determination stated: ‘I am simply stating let me be.’ . . . (T)he State’s interest in the preservation of life does not extend to Mr. Caulk’s personal choice and fundamental right to be left alone, a right which does not involve harm to others, directly or indirectly. When the State interferes with an individual’s right to act in a way which affects only his personal well-being, it not only denies the individual’s basic liberty, but it menaces the liberty of all individuals and threatens the very principles upon which our society is based.” He argued that as long as certain safeguards were in place “the State is not aiding or abetting a suicide; it is merely leaving an individual alone to speed the natural and inevitable part of life known as death.” Id. at 232-237 (Douglas, J., dissenting).

95. Id. at 232.

96. Id. at 232.

97. “The distinction comports with fundamental legal principles of causation and intent. First, when a patient refuses life sustaining medical treatment, he dies from an underlying fatal disease or pathology; but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.” Vacco v. Quill, 521 U.S. at 801.

107. The Court found several oral statements made by Terri Schiavo when competent “to be Terri Schiavo’s oral declarations concerning her intention as to what she would want done under the present circumstances and the testimony regarding such oral declarions is reliable, is creditable and rises to the level of clear and convincing evidence to this court.” Id at 9.

116. Address of John Paul II to the Participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,” (March 20, 2004), available at http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html (last visited February 20, 2007). (“I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering. . .The obligation to provide the “normal care due to the sick in such cases”. . . includes, in fact, the use of nutrition and hydration . . . The evaluation of probabilities, founded on waning hopes for recovery when the vegetative state is prolonged beyond a year, cannot ethically justify the cessation or interruption of minimal care for the patient, including nutrition and hydration. Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission . . .”)

117. See Thomas A. Shannon & James J. Walter, Implications of the Papal Allocution on Feeding Tubes, 34 Hastings Center Rept. 18 (2004) (“Historically, the method for making a determination about the use of a medical intervention was to consider the proportional benefits and its harms to the individual, family, and community.”)

118. Manuel Roig-Franzia, Catholic Stance on Tube-Feeding Is Evolving: Terri Schiavo Case Reopens International Debate on Ethics and the End of Life,’ Washington Post , March 27, 2005, at A07

119. United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, Fourth Edition (2001) available at http://www.usccb.org/bishops/directives.shtml (last visited February 20, 2007) (“24. In compliance with federal law, a Catholic health care institution will make available to patients information about their rights, under the laws of their state, to make an advance directive for their medical treatment. The institution, however, will not honor an advance directive that is contrary to Catholic teaching. If the advance directive conflicts with Catholic teaching, an explanation should be provided as to why the directive cannot be honored.”)

123. The amendment proposed by the Diocese would have qualified all references in the statute to “permanently unconscious” with the language “and for whom life sustaining treatment would not provide a reasonable hope of achieving its purpose or would pose an excessive burden on the person.” The Diocese also proposed restricting the circumstances under which life-sustaining treatment could be withheld or withdrawn from a pregnant woman by amending the current language allowing such withdrawal or removal when such treatment would be “physically harmful to the principal” by adding the phrase “to the point of threatening the life of the principal or that of the fetus.” Another suggested change would have limited the term “near death” by adding the language “and impeding within days” to the phrase “death is imminent.”

124. See Compassion & Choices, Summary of State Bills Restricting End-of-Life Choices Introduction and action in 2005 and 2006 available at http://www.compassionandchoices.org/documents/EndofLife_Legislation_Chart.pdf (last vistied February 10, 2007).

125. See National Right to Life Committee, Model Starvation And Dehydration Of Persons With Disabilities Prevention Act, Revised January 2006, available at http://www.nrlc.org/euthanasia/ModelBillAnnoucement.html (last visited February 10, 2007). Under the model legislation, no guardian or other substitute decision maker would have the authority to make a decision on behalf of a person legally incapable of making health care decisions to withhold or withdraw hydration or nutrition from such a person unless “the provision of nutrition or hydration would not contribute to sustaining that person’s life or to providing comfort to that person.”

126. Mitchell Simon, Foundation for Healthy Communities, NH Partnership for End of Life Care, Advance Directives in New Hampshire: A Statutory Review & Survey of Current Issues, (December, 2000) available at http://www.healthynh.com/fhc/initiatives/performance/eol/eolreports.php#StatutoryReview (last visited January 10, 2006).

130. See former RSA 137-J:2 (1991 N.H. Laws 146:2), repealed by 2006 N.H. Laws 302:2, eff. Jan. 1, 2007. Except for a provision that “(a)artificial nutrition and hydration could not be withdrawn or withheld under a durable power of attorney for health care unless there is a clear expression of such power in the document,” and a provision limiting an agent’s authority to consent to withholding life-sustaining treatment from a pregnant woman, there were no limits placed on an agent’s right or ability to refuse treatment on behalf of the principal. An agent was explicitly not authorized to consent to voluntary admission to any state institution or to voluntary sterilization.

131. See 137-J:2 XIII (more restrictive definition of life sustaining treatment makes reference to the principal being “near death or permanently unconscious”); RSA 17-J:10 I (agent’s decision to withdraw or withhold life sustaining treatment, including medically administered nutrition and hydration, in the absence of a living will, requires that the principal be certified by two physicians or a physician and an ARNP to be “near death” or “permanently unconscious.”); RSA 137-J:10 III; RSA 137-J:10 V,

132. 137-J:26 (III) (“An agent may consent to a do not resuscitate order for a person who lacks the capacity to make health care decisions if the advance directive signed by the principal grants such authority.”)

133. The new requirement for certification that a principal is permanently unconscious or near death, contained in RSA 137-J:10 I (b), could be interpreted as establishing a procedure for terminating life sustaining treatment in accordance with the language of the statutory form in those narrow circumstances. Since the definition of “life-sustaining treatment” is also restricted to these situations, it could be argued that refusing treatment outside of this narrow context is not a decision relative to life-sustaining treatment as it is now defined, so the certification requirement is not applicable. A decision made on behalf of an individual who is not near death or permanently unconscious can arguably be viewed as a treatment decision outside the scope of this provision, even if the decision involves foregoing treatment that could prolong the person’s life.

134. RSA 137-J:20

135. Id.

136. “The New Hampshire Constitution pt. 1, art. 15 guarantees due process to individuals facing a potential deprivation of liberty. . . The due process guarantee attaches to proceedings to establish mental incompetence, which are civil in nature but “possess a special character of their own.” In the Matter of Gamble, 118 NH 771, 775 (1978) (The State is required to obtain guardians for incompetent institutionalized persons.)

137. Johnson v. Zerbst, 304 U.S. 458, 464 (1938)

138. United States v. Mapp, 476 F.2d 67, 77 (2d Cir. 173)

139. RSA 137-J:20(“EVEN AFTER YOU HAVE SIGNED THIS DOCUMENT, YOU HAVE THE RIGHT TO MAKE HEALTH CARE DECISIONS FOR YOURSELF AS LONG AS YOU ARE ABLE TO DO SO, AND TREATMENT CANNOT BE GIVEN TO YOU OR STOPPED OVER YOUR OBJECTION. You have the right to revoke the power given to your health care agent by telling him or her, or by telling your health care provider, orally or in writing, that you no longer want that person to be your health care agent.”)

140. The Foundation for Healthy Communities, Advance Care Planning Guide (2007), provides the following explanation: “Why would I want to allow my health care agent to make decisions over my objection? A DPOAH allows your health care agent to make decisions if you are unconscious or unable to communicate your wishes. A DPOAH may also be used to allow your agent to make decisions for you even if you are conscious and able to communicate, if your health care provider believes you lack capacity to make health decisions due to a condition that affects your cognitive or intellectual functioning, such as Alzheimer’s disease, dementia or mental illness. When you sign your advance directive, you must decide whether or not to give up your right to object to your agent’s decision. If you do not give up this right, treatment cannot be given or withheld over your objection. However, a Petition could be filed in Probate Court to have a Guardian appointed to make medical decisions for you (as could be done if you did not have an advance directive). Some people want to avoid the possibility of a Guardianship proceeding because of the potential financial costs, embarrassment, loss of privacy and stress on the family from a Court proceeding. They are willing to trust their agent and providers to always make the right decisions. Other people prefer to retain their right to object to unwanted care or treatment, or want to be sure to have access to legal advice and procedural protections of the Court process in the event they do not agree with decisions being made.” available atwww.healthynh.com .

147. Id.; American Medical Association, Council on Ethical and Judicial Affairs, Optimal Use of Orders Not to Intervene and Advance Directives, adopted June 1997,Pyschology, Public Policy, and Law, 1998; 4: 668-75.

148. AMA Code of Medical Ethics, Opinion E-9.91

149. See The Role of the family in Health Care Decisions: NH Laws, Mitchell M. Simon and Victoria L. Blais, N.H. Bar J. (December 1995) (suggesting that such a right could be inferred from Thornton v. Gilman, an 1892 case in which a person handling the property of an incompetent person without Court approval, referred to as a guardian de son tort, was found to be holding the property as a fiduciary).

151. Id. “Factors that should be considered when weighing the harms and benefits of various treatment options include the pain and suffering associated with treatment, the degree of and potential for benefit, and any impairments that may result from treatment. Any quality of life considerations should be measured as the worth to the individual whose course of treatment is in question, and not as a measure of social worth. One way to ensure that a decision using the best interest standard is not inappropriately influenced by the surrogate’s own values is to determine the course of treatment that most reasonable persons would choose for themselves in similar circumstances.”

163. Testimony of Dr. Ira Byock, Director of Palliative Care at the Dartmouth-Hitchcock Medical Center, to the NH Senate Judiciary Committee, in the context of DNR Orders, reflects similar concerns about legislatively mandating specific medical interventions without regard to individual circumstances: “Yet, everyone eventually dies. Do Not Resuscitate Orders must only be written after careful assessment and discussion. They are serious orders. But because we are all mortal, at some point in the course of a progressive illness, it is often essential that a DNR order be written. Performing CPR on every dying person, even those who have never discussed the subject or completed an advance directive, would be medically contraindicated and ethically troublesome.” Public Hearing on H.B. 656 Before the Senate Judiciary Comm., 2006 Sess, March 28, 2006. (NH 2006), Senate Judiciary Committee Record.

164. Kathy L. Cerminara, A View from the Battleground – Or lessons for physicians from Schiavo, Florida Bioethics, July 2005, p. 8

165. See ABC News/ Washington Post Poll: Terri Schiavo (March 13, 2005) (87% indicating they would want life support terminated if in a persistent vegetative state); Joseph Carroll, Gallup News Service, Public Continues to Support Right-to-Die for Terminally Ill Patients, (June 19, 2006) (Gallup Polls conducted from 1990 through 2006 all reflect between 65% and 75% answering “yes” to the question “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means?”)

166. The following sample language, designed to give an agent the broadest possible authority, was crafted by attorney John Norton of Keene, NH: “Broad and Complete Powers Being Granted. It is my intent to grant to my Agent the broadest and complete power and authority to act in making all health care decisions on my behalf, as I would have if I had capacity to do so, including all decisions to both consent to and withhold treatment, in addition to that specifically set form in this Advance Directive. And in complying with this grant, no then existing statutory or other presumption in law shall in any way limit my Agent’s authority granted hereby. If any provision(s) or agent power(s) granted in this Advance Directive or its application to any person or circumstance is held invalid or otherwise deemed unenforceable by virtue of my desire to give my agent the broadest powers possible, it is my express intention that such invalidity shall not in any way effect any other provision(s) or application(s) of this dvance Directive, which can be given effect without the invalid provision(s) or application(s).”

AuthorAttorney Carol Stamatakis is an attorney and director of planning for the New Hampshire Council on Developmental Disabilities. She chairs the New Hampshire Bar Association Mental & Physical Disabilities Law Section.